PN and Tamsulosin (Flomax)

Hello, chapanddrew8 (@chapanddrew8)

Curiously, I was never tested, not for the answer to the question: large fiber vs. small. My neurologist arrived at the conclusion (large fiber) more or less by a process of elimination (months of monitoring my symptoms).

My blood several years ago suggested I was "borderline diabetic," but when I asked my PCP if I need to be concerned, she told me "borderline" nowadays means I'm one of the majority of the population, especially at my age (78). I trust she's correct.

I may be wrong about this, but I believe my not having any pain along with my PN was one consideration that led my neurologist to call my PN "large" fiber.

Here's wishing you a glorious weekend!
Ray (@ray666)

It sounds like you have it under control, but doing glucose test for sugar, a good one with actually, fasting before you take blood drawing throughout the day at least that’s how they used to do it. I actually had that done also. My blood sugar is always good. Even when I don’t fast. Perhaps another conversation with them about it unless you’re satisfied. Happy Thanksgiving and thank you again.

Ray - you caught my attention on the “pain” (not that you don’t usually catch my attention). I have severe Idiopathic Axonal Sensorimotor Peripheral Neuropathy (i.e. large). Unfortunately, along with balance, gait, numbness & tingling, mine comes with nerve pain & temperature sensitivity in my extremities, both of which are kept pretty well maintained with Gabapentin. My Large diagnosis was confirmed by EMG - have you had one of these? Since my initial test, I’ve had about 4 more, as new doctors wanted their own tests done. (@chapanddrew8 - like you, all blood tests over the years, including diabetes, have been negative, so I am officially under the Idiopathic label for now, which like Ray, if anyone ever comes across a reason in my lifetime, I’ll give them a hug then keep working on my physical therapy and enjoying life)
I have often wondered if it’s possible for me to ALSO have SFN, as it seems like my normal symptoms identify with both groups. I have asked for the biopsy in the past so we could see, but 2 different Neurologists shot down the idea because they tell me that my EMG clearly tells us the Axonal Sensorimotor and eliminates SFN. I’m the type of person that wants them to do it anyway, just like I’d like to have a diagnostic MRI as well, just to put closure on me knowing we’ve done every test, but the Neurologists have refused to order them because of them saying my EMG is conclusive. So I finally accepted that and have shifted focus to recovery and maintenance.

Hi Debbie @dbshears1, I think I would have the same questions if I had your symptoms. It sounds like you can have both axonal sensorimotor PN and small fiber PN together. Not that I understand how it all fits together 🙃. I did find this article that sounds like it's possible but the odds are high.

"Is axonal neuropathy the same as peripheral neuropathy?
Autosomal recessive axonal neuropathy with neuromyotonia is a rare form of inherited peripheral neuropathy. This group of conditions affects an estimated 1 in 2,500 people"
--- Autosomal recessive axonal neuropathy with neuromyotonia: https://medlineplus.gov/genetics/condition/autosomal-recessive-axonal-neuropathy-with-neuromyotonia/

Thanks so much John- I’ve never seen this before and it’s very interesting! I’ve been through a lot of PT and take a regular Tone & Balance class here, and one thing I’ve learned over my 7 years (or think I have) with this is that I have to know my body limits as it now takes me much longer to recover from over exertion, sometimes to the the tune of days or weeks. That’s hard for me, as I used to run long distance races and would expect to be sore for a day or two afterward, but now, if a therapist asks me to see how many times I can repeat sitting in a chair then standing in one minute, I know to tell them that it’s not an event I qualify for, as the damage will stay a long time, and it’s a better exercise for me to slowly stretch and strengthen things. I’m reminded of that today because I am having PT with a new therapist, in advance of foot surgery in 2 weeks (I’ve decided to move forward with the hammertoes correction…) Last week I tried to impress my new therapist by doing what he asked with the sitting & standing, and now we’ve stopped the therapy as we realize I’ve injured the knees I’ll need to walk with while in my surgical shoe, so we’re letting me rest & repair now until surgery.
On the genetic testing… since I just moved here, my new PCP just recommended that to me recently and made a referral to the genetics group. I have an appointment in January. It will be interesting if there are any findings like your article suggests is rarely found. Thanks again for sharing and making us more informed!!

Good morning, Debbie (@dbeshears1), John (@johnbishop), and chapanddrew8 (@chapanddrew8)!

Oops! It’s afternoon, twenty-seven after twelve. Let me correct myself: Good afternoon!

And let me (if you will) write a combined reply. Reading your posts makes me realize how unsure I am of my own PN diagnosis. When asked, I’ve become quick to reply: “My PN? Oh, yes, it’s idiopathic sensory-motor PN. And large fiber, by the way, should you be wanting to know.” But how do I know all that? How can I be so sure? Where did I derive its many terms ("idiopathic," "sensory-," "-motor," "large fiber")? I’m afraid it’s a bit of a patch-together; the patching done gradually over the past 15 months (since my diagnosis). The first term ("idiopathic") was given to me by one of my two neurologists only minutes after he’d finished administering my EMG. I remember the moment well. It was late on an August afternoon. Storm clouds were pouring in over the Rockies. (I’m seeing the scene through the exam room window.) I thought it strange––and a little unsettling––that after telling me I could put my shoes and jeans back on, the doctor drifted away from me and stood by the window, saying nothing, for what felt like hours but was only a minute or two. When he returned to where I was sitting, he said, “Ray, I’ve good news and bad news. Which do you want first?” Then, without waiting, he went on: “The good news is I ruled out the more serious diseases like Parkinson’s and MS. The bad news is peripheral neuropathy. To make the bad news somewhat worse, it’s ‘idiopathic,’ meaning we don’t know what’s caused it. Worse yet, there is no known cure.” That was the first time I’d heard the term “idiopathic.” The other terms (“sensory-,” “-motor,” “large fiber”)? I gleaned those over the ensuing months, running each term past my doctor to get his seconding. (“Idiopathic” remains one of my favorite expressions. Although I knew what it meant, for the giggles, I checked its etymology. My OED gave me for “idio” = “peculiar,” and for “pathic,” adjectival for “pathos” = “suffering.” I laughed to imagine myself saying to people in a long checkout line, “You may want to let me get to the head of the line. I’m afflicted with a peculiar suffering,” stressing the word “PECULIAR!” 😀 )

Whoa! I’ve gone on too long. That’s what comes of a lazy at-home Sunday.

Here’s wishing us all a good week!
Ray (@ray666)

Ray - I get you. Over my first 6 years ( different doctors, 2 medical university hospitals, different states), the descriptions of my PN throughout visit notes were a hot, scrambled, confusing mess of medical jargon. Not all words describing my condition were used at once. The one consistent term used was Peripheral Neuropathy, or PN. Then another doctor’s notes spelled out PN as Poly Neuropathy. I asked that doctor- “OK, help me with what P in PN stands for, is it ‘Peripheral’ or ‘Poly’?” His helpful answer was “Well, you could say both”😵‍💫. Extra words were sometimes added, like “severe” to indicate my level of disability from it. Axonal was always used, SFN was never used… Everything was always a tongue twister.
So as I was seeing my NC Neurologist for my last time before setting up shop with new doctors in SC earlier this year, I pleaded with him to write down for me exactly how I’m supposed to call this thing so I can accurately tell all my doctors, friends, and neighbors, that going into my 7th year with this I wanted to get it right. So he wrote “Severe Axonal Sensorimotor Peripheral Neuropathy”. He said technically I could add poly in there somewhere if I wanted to but wasn’t necessary. He drew me a diagram explaining large vs small and my EMG results and why he says I don’t have SFN. He explained why he didn’t believe it was CMT though he acknowledged I hadn’t been tested.
So Ray - sometimes we just have to laugh about it don’t we? I sometimes find it easier to explain to folks what I know it’s NOT. So I feel your pain (because lucky you, with your PN, you don’t feel any, lol) Deb

Hi, Deb

As always, you have me chuckling. Chuckling, and yet what you say always has the ring of truth––truth, and familiarity. I have a tele-med appointment tomorrow morning with the neurologist who first diagnosed me. I spent the last half hour putting together questions I'd like to ask, chief among them: Does my recent blood work suggest that it's okay to continue with the EB-N5? My other questions are mostly "filler" questions, in case I get the feeling that I'm the one who's expected to carry the burden of the conversation. I mention this because you've given me an idea––a perfect idea!––for yet another question: What should I call this "thing" I've got? ("Go slow, Doc, please! I'm writing this down.") Like your experience, I now have so many applicable terms ("poly-" vs. "peripheral," "axonal" if I choose to use, "severe" if I think it helps to tack it on, etc.). As I believe I said in an earlier post, for the past few months I've been calling my "thing" idiopathic sensory-motor PN (I've been holding terms like "axonal" and "severe" and "large fiber" in reserve). I don't know my neurologist well; I know him well enough, I believe, he's a good man––a bright, capable, caring, good man. But I also know (or imagine) that meeting day after day with people with essentially incurable diseases can be downright spirit-deflating. I just hope my neurologist isn't sitting at home right now thinking, "Oh, gawd, tomorrow morning at 9 am I have to phone Ray. I sure hope that he doesn't ask me to give him The Cure!" 😀

Stay well, Deb!
Ray

Well - after all I wrote, I STILL got my doctor's final Label for my affliction wrong - I forgot the word IDIOPATHIC! So my "final" diagnosis from him was actually "Severe IDIOPATHIC Axonal Sensorimotor Peripheral Neuropathy" (I knew when I wrote it before it seemed to be missing some syllables. This is exactly why it helps to refer to our written notes. Good luck tomorrow!!

If you want some easy to understand videos on the different neuropathies, checkout Dr. Matthew B. Jensen’s YouTube channel
https://youtube.com/@MatthewBJensen